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new diagnosis (Read 6747 times)
janknit
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new diagnosis
Apr 2nd, 2011 at 9:02am
 
Hi I am a 53 year old woman who was diagnosed with moyamoya yesterday.  I had a small stroke 10 days ago.  I have had no residual effects.  I had an angiogram yesterday that confirmed the diagnosis.  I was told that I have good compensation from both the right and left side of the brain. I am on a baby aspirin and have an appointment with a neurosurgeon in two weeks.  I am going on a cruise next week, was told to take my aspirin and stay well hydrated.  I am nervous that I will have another stroke. I feel like a ticking timebomb.  I had no symptoms prior to the stroke.  My stroke symptoms were a 15 second inability to spreak and heaviness in my right hand. Any insight would be appreciated.  Thanks you and God Bless
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Lore
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Delaware, USA, usa, 419, 133, OH, Ohio
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Re: new diagnosis
Reply #1 - Apr 10th, 2011 at 12:51pm
 
Hi Janknit and welcome.

It sounds like you have caught this early. The fact you have good blood flow at the moment is a good thing. With MM the arteries narrow and close so the progression can be different for everyone. The fact you have had a stroke tells me the arteries are narrowing and lack the necessary oxygen needed and although you have good blood flow now, the issue is the progression of the narrowing and closing of the carotid arteries so you want to get treated sooner than later. Some MMers don't have symptoms but the majority find out they have MM due to TIAs or strokes. All MMers refer to themselves as ticking time-bombs so I understand your fear of stroking again. The bypass surgery puts Mmers on a level playing ground meaning after surgery, they stand the same chance as any other person in terms of having a stroke based on life style choices etc.
Taking aspirin and staying hydrated is normal for MMers.

I hope you enjoy your cruise and keep us posted on your visit with the neurosurgeon.

Best wishes,

Lore

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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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saboliz
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Re: new diagnosis
Reply #2 - Apr 16th, 2011 at 1:08pm
 
My name is Liz I am 49 years old. I too had a TIA mini stroke while walking. I am a half marathon walker and was beginning my training for the Flying Pig Marathon when I had a mini stroke in February. I actually had to wait till March to get the results from my CT scans because we went to Luxembourg to see my daughter for two weeks.  I had my surgery on March 24, 2011 and am now in three weeks of my recovery. Since you now know the signs. Take the aspirin, hydrate and relax on your cruise. If you feel tingling or numbness. I would stop doing what you are doing to regain the proper oxygen level. Just listen to your body. Please keep us posted.
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SandyR
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Re: new diagnosis
Reply #3 - May 5th, 2011 at 8:18pm
 
Hi,  I am a 58 year old woman who just had a stroke on Mar.17 2011 . My MRI said I had Moyamoya disease.  This stroke was only speech difficulties which started getting better a few days later.  The neurosurgeon spoke of shunts and balloon plaque compression but he does not want to do anything with me as I have other health problems.  He wants to just wait and see how I do on the Plavix and Crestor.  Any comments??
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saboliz
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Re: new diagnosis
Reply #4 - May 9th, 2011 at 9:38am
 
Sandy R.,

I am sorry to hear you had a stroke and hope things are getting better. I don't know what your other health problems are, but I was told that Plavix and Crestor would not do anything to help me. There is still no known way to stop the arteries from narrowing.

I would get a second opinion. Read more or ask to be referred to one of the other surgeons that knows a lot about Moya Moya Disease.

Good Luck,

Liz
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SandyR
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I had it all together.but
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Re: new diagnosis
Reply #5 - May 12th, 2011 at 11:09pm
 
Hi Janknit,  our stories are similar.  I am 58 and just presented with stroke symptoms of talking odd and couldn't  find my words.  The next day  I started talking better.  I had no weakness at all.  I had a stroke  according to my MRI and CT.  In fact they said Ive been having strokes for over 20 years.  I was completely clueless.  I supposidly have extensive collateral circulation  covering my whole lower brain below my ears and hardly no circulation above. Embarrassed  The radiologist Neurosergeon at Northwestern hospital in Chicago...doesnt feel he can help me with regular stents and angioplasty...his only help was  telling me to stay on the Plavix and Crestor and wait...but he did say I will have another stroke within a year. All I could say was.."It figures". So Ive been taking the meds and waiting for the big day! I did have my records sent to Dr Steinberg at Stanford as Ive heard so much about him on here.Maybe he can help me.  I ve been an RN my whole life and I never noted any stroke symptoms.  My Bps were never high  120s /70s...My cholesterols `170s.I have many allergies   dairy eggs chicken fish  so my diet was pretty cholesterol low. I have had tons of STRESS in my life however.  Anyway  YOUR STORY  WAS SIMILAR TO MINE...S ShockedANDY R
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lotsofkids
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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
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Re: new diagnosis
Reply #6 - Jun 22nd, 2011 at 12:43am
 
Sandy....

I am a bit concerned that you need to consult with a second opinion! (Plavix and shunts are not standard protocol for MM)

5yrs ago when I received my dx (at age 45), I got two very good and comparable courses of action. I also got 1 very poor and dangerous plan from a highly reputable hospital. We scratched off that Neurosurgeon from our short list. You must read up (and this site is a wealth of info) and many times, you may be more up to date than those you are seeking help from. Ask questions like: How many surgeries have they done in the past 10yrs for MM. Do you have a dedicated anesthesia team familiar with MM available for the surgery? You don't want to be on their learning curve!

I was 100% occluded on both rt and left sides with 14% reverse blood flow (if you can actually be worse than 100%....I was!)

The 3rd opinion "doctor" wanted to take a "wait and see" approach! When I asked if he would guarantee I wouldn't have a major stroke in those 6 months...he then suggested we surgically do one side. (I needed both sides done and STAT!) I am happy to say....I am doing quite well and they were successful surgeries. I was a real ticking time bomb....and could not wait.
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Hmmm....seems I'm kinda "special" LOL
 
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lotsofkids
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Moyamoya...Oh boya boya!

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Akron, USA, usa, 421, 123, OH, Ohio
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Re: new diagnosis
Reply #7 - Jun 22nd, 2011 at 12:50am
 
@Jankit....

A cruise is probably good for you! You need to de-stress after having MM placed in your lap. Just, know your body signs....REST, HYDRATE, RELAX and take your prescribed aspirin. Have faith....you will be OK.
It is a blessing to get a dx...then you can work on getting fixed and in better health. (I was misdiagnosed for 5 years and was dangerously close to a catastrophic event)
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Hmmm....seems I'm kinda "special" LOL
 
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janknit
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Re: new diagnosis
Reply #8 - Sep 21st, 2011 at 9:50pm
 
Hi everyone
I wanted to give an update on my condition.  I was able to contact Dr. Steinberg and have him review my records.  His office was fabulous, they worked really hard to be able to enable me to get to them for surgery.  I had my bypass on July 27, 2011 The hospital personnel was unbelievably supportive. Every single person we met was efficient, knowledgeable, compassionate and thorough.  Teresa Bell-Stephens was wonderful, actually everyone involved was wonderful.  I had the surgery on Weds. was in ICU one day, on the regular floor by Thurs. at noon, discharged from the hospital on Saturday.  Headed from California back home to RI one week after the surgery. For the first month I had occasional numbness in my right fingers and some word finding and speech clarity issues, which Stanford had advised me would be normal for the first few weeks while my brain tried to figure out how to reroute all this new blood flow. Now I am feeling great, I can definitely tell when I am not staying sufficiently hydrated.  I would advise anyone with moyamoya to contact Dr. Steinberg at Stanford. I feel so very blessed to have been diagnosed so quickly and to be able to have been treated at Stanford.
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